Thursday, October 31, 2013

Well, Halloween this year was one crazy adventure after another. Jason ended up having an overseas trip for work; his parents graciously offered to come down and help out. This was fantastic, obviously b/c the kids love it when Nana and PopPop visit, but this was also my last week at my job and I had a lot projects to try to finish up. Oh, and start (and finish) the girls' halloween costumes.

Carving pumpkins!

Jack-O-Lantern Girls

I might have figured out how to use my sewing machine on my own, but never in enough time to finish the costumes for Halloween. Vivian chose to be a "real bat" this year--a fuzzy body, big wings, an upturned nose and big ears. The nose was the only thing we didn't deliver. Elena decided to be a bat too, which worked great with her crutches (it's a little hard to see in these pictures). Right as I was finishing some ties for Elena's crutches, I put my needle down and our cat Temple ATE IT. Nana and PopPop spent the evening at the emergency vet (bless their hearts) while I gave out candy and Jason took the girls trick-or-treating.

Viv shows off her wings

E's wings are tied to her crutches

The girls were out for a little over an hour, walked at least two miles, and got a nice load of candy. E was limping a little--that might be a strong word for it--she was walking funny, I imagine it was spasticity compensating for fatigue. Still, she was in a great mood. Temple had her needle removed and was home the next morning. Huge thanks to Nana and PopPop for saving Halloween!

Tuesday, October 29, 2013

Huge thanks to everyone who gave me encouragement/commented about my last days here at work. I feel better every day about leaving that stress behind. I figure I might miss the science professional in me later, but I imagine it will take a while (minimum 6 months?)--anyway, I've been thinking about the weather getting colder, activities for the kids, managing spasticity, etc.

Starting NEXT WEEK (!) I will have more time, I am brainstorming of ideas for the cooler weather. I promise, I am not going crazy/trying to fill up my time--but I would like to prepare for Elena's tightness in cooler/cold weather, if I can. Here are some ideas I have planned--please, PLEASE leave a comment if you have suggestions! Now's the time!

In no particular order:

1. Finish the playroom. We sacrificed our beautiful dining room as the "crash room"--super thick carpet, padded anything with corners, and baby-gated the whole space while Elena was learning to walk. It was a GREAT decision. Once she was more stable on her feet, it became the playroom. There are toys everywhere, too many to count. The playroom will be a featured playspace ("less is more" playing concept, lots of sensory input at Elena's suggestion) with storage features for toys not in use. I'm hoping to get our dining room back in order by the summer at the earliest. Which means

2. Our only table will become a craftspace in the kitchen. It's a great idea--especially now that my sewing machine is out finishing up Halloween costumes.

3. I want to make more Crutch Pockets for Elena. It's wonderful for winter! I want to change the shape/fastener a bit so Elena can take them off/put them on without assistance.

4. Elena needs a belt. I have some ideas for fasteners (not velcro, it will ruin some of her clothes and if she doesn't get it right, will scratch). Her pants are either to loose, or too short. I'm thinking a snap-clasp or seat-belt buckle type thing. I'm not sure yet.

5. Anyone have rice/seed packs for hand/neck warmers? Where you heat them up in the microwave and they stay warm for a while? I think that would be good for some sort of thing to warm up feet. Slippers don't stay on E's feet all that well. I'm still thinking this one through.

6. Stretching/spasticity ideas: One time I warmed up flat marbles and put them between Elena's toes. She LOVED it--it was weird, but a good 'wake up toes' stretch. Maybe I could get some sort of mushy tension ball and she could try to push it around with her feet. Foot/leg massages, obviously.

7. I want to find some sort of beverage container that's spill-proof, unbreakable, that has a relatively small volume that's EASY TO CLEAN in the DISHWASHER for warm beverages (tea, hot cocoa) for the kids. Any suggestions?

8. I need to find winter boots. Lightweight, big, open-tongue (we liked the Circo boots from Target, but I haven't seen any lately) to accommodate her braces. I love the look of some of the boots out there--but they weigh A TON, and in deep snow (or any snow, actually) Elena just won't be able to move. I'll also get some crutch tips with traction (for snow/ice) that are only for sledding/skiing (b/c they'll tear up indoor surfaces). If we do a little weight training, E will be ready for movement in the snow (it's amazing how much that makes a difference).

9. Neckwarmers for the kids. E loves scarves, but I'm afraid they'll be a choke hazard if she trips. I sense another sewing project.

10. The kids love decorating! We start Christmas decorating right after Thanksgiving. This year we will do lights! Vivian is getting the idea of calendars, and she can read, so that gives me some inspiration.

11. Lots of cooking, of course! Doodle friends, is there any interest in a little recipe share between our kids? They all love mail...maybe your child can pick one of their favorite recipes, tell why they love it so much, and send it along with a picture to another blog friend?

And NO I do not plan on doing all of this immediately (or, maybe even ever). I do plan on having a day or two of rest. This is just fun brainstorming....

Wednesday, October 23, 2013

Parent-Teacher conference: Elena is doing well in 3rd grade. I feel like...well, it always takes longer for Elena to learn anything--gross motor, fine motor, speech, vision--and academics seem to be the same way. And that's okay. Quite frankly, we are thrilled that Elena is mainstreamed in school and is "on grade level". We have a private math tutor, which is going quite well--without him, Jason and I feel strongly that she'd fall behind (or be more behind than she is). It's a little weird...it takes longer for Elena to get a concept (borrowing and carrying numbers, for example) but once she gets it, she gets it. But it seems to be that way with almost anything. E just takes more effort, I guess. We do most of this privately, b/c I feel strongly that the teacher/aides are busy with lots of kids (not just mine) and that I need to be conscious that others might need more attention in the classroom. It is a struggle, but the payoff is worth it. Absolutely. She loves her class. I love her school. I love her aide, and how receptive they are to my concerns. We listen and communicate. I am pleased with her educational team, and I am proud of E. I am also tired, b/c this takes a lot of effort.

Vivian is doing well in preschool. She is reading (has been for a while), and Jason and I feel like she might not be as academically challenged as she should be. BUT, she is still learning how to be patient, take turns, not interrupt, etc. so her preschool environment is great for that. She enjoys her classmates, and is excited to tell me about her day. Viv is a gem of a girl. And she really knows how to encourage and enrage her sister. Typical little sister.

I am TIRED. I have 7 more days at my job before my resignation date; and I have to confess, I am ready. A large part of me is disappointed in myself for not making it work (work-life balance), and the other is proud of me for finally realizing that "doing it all" isn't making anyone happy. Elena and Vivian can't WAIT for me to leave work (even though they'll still be at school). Our health benefits will change, but we are prepared for it. Jason is supportive. Our woefully neglected house will get some TLC. I will be more present for the kids, for their education, for their enrichment, for Jason, and simultaneously, have some time for myself. It still sounds like a fantasy. I hope it isn't.

I have a lot to do before Halloween and Vivian's birthday. Lots is going on in my head (some of it is even on paper!) but I am way, way WAY behind. Mostly I'm busy trying to wrap things up at work and trying not to stress out about other things. If it's important, it'll get done. That's the modus operandi around here lately.

Piano Lessons: Elena has been asking for piano and voice lessons for MONTHS. Jason took the initiative and found her a great teacher close to home. E's piano lessons not only give her confidence and help her enjoy something new, but it helps with her fine motor skills (obviously), core strength, sitting posture, math skills, and she LOVES IT. It is nearly impossible for her to practice every day (there simply isn't enough time between school and bedtime) but we'll stick with it as long as she is enjoying herself.

Spasticity Update: E is on her toes more. I feel like she looks bigger lately...that could be part of it, but regardless of growth, she is on her toes more than she used to be. I hope to wait for any lengthening procedures until she is 10 years old--I hope we can make it. I'm also entertaining different doctors--I'm just not sure our orthopaedic team here is passionate about helping Elena to find her true potential. Second (or third) opinions are always a great idea, so I'm hoping to make some appointments in Summer 2014.

Thursday, October 17, 2013

A few weeks ago we headed out to Belvedere Plantation--I've just been too busy to write about it. It was AWESOME, as usual. We love coming here. The changes in both Elena and Vivian are obvious, tangible, and beautifully heartwarming.

The day was gorgeous--not too hot, with leaves just starting to change color.

Girls with the Pumpkin Princess

Again, this was a situation where we decided NOT to bring any mobility devices save Elena's crutches. The plantation is expansive, and the motor skill activities are diverse. We thought Elena might get tired--but she is too large for a stroller, too large for a wagon, and her wheelchair isn't a good fit here either. We had confidence she would do well, given our experiences at Busch Gardens and Disney earlier this year.

Sisters at the Plantation

Our first stop was the Jumping Pillow. We were there early, so it wasn't too crowded. Elena has made a lot of progress jumping on the trampoline this year, but this is a curved surface, so it's tougher. Elena asked for my hand, so we decided to jump together.

Walking on air

Jumping together

Barrel Train. Elena said she's too grown up for it. (Probably true)

There is a big underground slide, where you ride on a burlap sack. In the past, both girls have ridden with a parent. This year, Vivian was adamant she would do it herself. It was fantastic, watching her run and carry her burlap, and laugh and smile as she ran to do it again.

Miss Independent

The hill going up to the slide is not trivial; it's quite steep, rocky, and then there's the sack to carry. Elena was firm that she didn't want to be carried. She tried to carry the sack, but it was too long and cumbersome--so Jason carried it, with Elena walking to the top. She rode with a parent, or by herself.

That's E in the middle

Riding with Mom

Fam shot on the quad slide

The plantation bought new tractor bikes; Elena tried these last year, and had a lot of trouble staying on the pedals, and the bikes were rickety. This year, Vivian and Elena needed minimal help! That's a HUGE change, especially for E!

Burnin' rubber

I am so psyched E is doing it herself!

The Hay Barn was also a huge hit. Both kids love the ropeswing, and E didn't slip as much while walking in the hay.

Swing E

Swing Viv

We cheered for our favorite pig during the pig races, and saw baby goats, and all sorts of farm animals. Both kids LOVED the zipline, it might be their favorite attraction (besides the pumpkins). Elena doesn't have quite enough momentum to make it across on her own--the staff got a lot of exercise helping the kids. Vivian got a lot of help too--my bets are, next year they'll be on their own.

Viv gets a push

I let E have a piggyback after all her ziplining

Pretty Pumpkin Head

Me

Viv is catching up to Elena

Sunflowers

We had to skip the corn maze this year. We were hoping to do it, but we were running out of time and the kids were both running out of energy. We'll probably hit another one closer to home before the season is through.

Hayride Sisters

Scouring the pumpkin patch for a perfect pumpkin is a lot of work. Every year, Elena gets caught in the vines and trips, or gets stuck--her best distance in the pumpkin patch on her own was approximately 3 feet. Not this year. She navigated the entire patch on her own, using one or two crutches. She didn't carry her pumpkin (she wanted to)--but neither did Vivian, they were just too heavy and awkward. Jason did carry our entire pumpkin haul for a discount at checkout (FIND THAT PICTURE), which was pretty impressive!

Monday, October 7, 2013

I don't post much about myself here. But this topic has been on my mind--constantly--since this summer (if not before that).

So, here goes nothing.

I work full-time. I have since before the kids were born. Overall, my job is pretty good--great benefits (even though they are cutting health coverage a bit, it's still pretty good), and I like the work (I guess you could call me a scientist). I also work seven days a week. Not full days on weekends--but in general, I have to be there every day when projects are being done, which is (in general) all year except Christmas, Thanksgiving, and a vacation here and there (planned well in advance). In return, I have a pretty flexible schedule that allows me to be at E's therapy appointments and doctor's visits, and maybe a field trip here and there for E or Vivian.

I sort of missed writing about the child care transition, even though it was pretty major. Since Vivian is in preschool now, we encouraged our Fantastic Nanny Annette to find a new job (which she did), and I have shifted my hours so that I am home for the kids after school. We all knew this would happen sometime...we hated to say goodbye to Annette (although the kids will still see here every now and then) but it was the best choice for everyone.

And I am exhausted. BUT--I love Love LOVE being there when the kids are out of school. Sure, some days they are just contrary (who isn't?) but I feel like life is more complete. The 5:00-7:30 pm "crunch time" isn't as severe, which is a really big relief. I am exhausted, though.

So.

It seems my employer and I may be at an impasse, in terms of the hours I work--because they do NOT like this change. I understand their point. I think they understand mine.

I'd like to keep working, as long as I can be here for the kids. That's the work-life balance I want. The balance I deserve, and the balance that I need.

I feel like actually having that--"Work Life Balance" is a joke. I'm not sure it exists.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.